San Francisco’s Zen Hospice Project Renews Commitment to Core Mission

After shutting the doors of their beloved Guest House, Zen Hospice Project remains steadfast to creating more mindful, compassionate end-of-life experiences for all. | A conversation with Roy Remer, Interim Executive Director of Zen Hospice Project

Photo: David Butow, via Zen Hospice Project

For years, Zen Hospice Project has garnered praise for reimagining the end-of-life experience for both the living and the dying. Guided by compassion and a commitment to service, Zen Hospice Project has helped many San Fransisco residents die in comfort, and they continue to educate caregivers across the globe on how to provide mindful, loving end-of-life care.

Perhaps the most well-known of Zen Hospice Project initiatives has been their Guest House. This residential hospice program garnered media attention over the years and was most recently featured in the Oscar-nominated End Game. This Netflix documentary offers a glimpse at the impactful, high-touch care provided by Zen Hospice’s interdisciplinary teams to those nearing the end of life.

After closing the doors of its Guest House last June, many have wondered what’s next for the organization and how they can best support Zen Hospice Project. End Well recently had the pleasure of talking to Roy Remer, interim Executive Director of Zen Hospice Project who shares the history and mission of the organization, the ways they continue to serve caregivers and the terminally ill, and how the End Well community can contribute to their mission.

What is Zen Hospice Project?

Zen Hospice Project (ZHP) is a non-profit organization, founded in San Francisco in 1987, that is dedicated to the mission of improving the experience of palliative and end-of-life care for as many people as possible. Since its founding, the organization has been recognized as an innovative leader providing care for those facing advanced illness and for their loved ones, while also educating and supporting an ever-growing community of caregivers worldwide.

What is ZHP’s mission?

We see caregiving as a significant and deeply human service.

Our work is grounded in practical expression of the universal spiritual values of compassion and service. Zen Hospice Project approach reflects a three decades-long association with contemplative traditions and practice.

  • We value mindful and wholehearted engagement with the present moment and seek to bring this awareness to everything we do.
  • We value the lived experience that dying is both sacred and unknowable, which allows us to be fully present to whatever we meet without preconceptions.
  • We value our interdependence and shared impermanence through which we can most intimately serve and support each other in living and dying.

How has ZHP’s mission shifted since its inception?

Zen Hospice Project was founded through a grant from the San Francisco Zen Center in an era when San Francisco was coping with the AIDS crisis and an influx of Southeast Asians who did not have access to adequate end-of-life care. Zen Hospice Project was founded with the goal of providing compassionate care for people who were stigmatized by their identity and coping with homelessness. From these founding moments, Zen Hospice Project’s mission to bring compassionate human-centered care to as many people as possible has only grown to include more and more people.

Today, our focus is on continuing to provide training and support to caregivers and volunteers through our Mindful Caregiving Education (MCE) curriculum and our Volunteer Caregiver Program. We are focused on and committed to making a meaningful difference in how family and professional caregivers, and our volunteers, are prepared and supported to provide compassionate palliative and end-of-life care.

We were saddened to hear that the guest house closed last year. Why did this happen?

Yes, this has been a huge loss for us; a really big change. After nearly 30 years of providing residential hospice and caregiving support to the dying and their family and friends, Zen Hospice Project ended caregiving services at the Guest House in June 2018.

The residential hospice program was a one-of-a-kind environment that functioned outside the traditional healthcare reimbursement process, which made it dependent upon not only grants and donations to sustain operations, but also referral and reimbursement partnerships.

When our partnership with a local leading medical center ended, we searched for another partner. We came close to establishing a new partnership, however the process took longer than expected. Despite many generous donors in our community who helped us sustain operations until this year, ultimately, generating revenue to maintain the level of care that we were providing became unsustainable, especially in the face of rising costs.

Do you plan to re-open in the future?

We have no plans to reopen a care facility in the near future. Our focus will be on our Volunteer Caregiver Program at Laguna Honda Hospital and new sites of service, and our Mindful Caregiver Education program. This is where we believe we can make the greatest social impact.

To ensure the success and longevity of these programs, the Guest House was sold. This allowed the organization to pay off debts incurred in an effort to keep the facility operating until a new partnership was secured. The sale also provided for an operating reserve to sustain the organization into the future. If the reimbursement landscape for residential hospice were to change in the future, we would consider trying to recreate what we had at the Guest House.

The loss of our beloved Guest House has had a profound effect on our internal and extended community. The Guest House was not only a care facility, but it was our home. We are still very much in a process of reestablishing who we are without our home.

But most importantly, this transition has not changed our mission to share our model of care with as many people as possible through MCE and the volunteer program. If anyone in the community has questions about our transition through the Guest House closure or what’s next for Zen Hospice Project, I welcome emails to me directly at roy@zenhospice.org.

What is the ZHP approach to providing palliative and end-of-life care?

Our approach is grounded in the contemplative practices of deepening awareness, cultivating an open heart, and accepting change and death as natural parts of life. In the context of hospice, death can be painful and sad, but it is not a problem to be solved.

We train caregivers in learning how to connect deeply with the persons whom they serve. We support healing and curing, however our focus is on cultivating a quality of presence that is not bound up in attachment to outcome. The practice of cultivating presence and acceptance of things as they are provides space for the people we serve to evolve and grow spiritually even as they approach the end of life.

What is mindful caregiving?

Mindful caregiving is the awareness that everything changes and while change can be painful, it is part of the human experience. It is a quality of presence where the caregiver notices when he or she becomes distracted and is practiced in returning attention to the recipient of care and task at hand. It is infusing the caregiving experience with prosocial emotions, which in turn invites deep human connection. It is witnessing without attachment to fixing.

How does ZHP support the caregivers/family of those nearing the end of life?

When we sit with caregivers and family members of those nearing the end of life, we hold space to express the difficult emotions that often arise when witnessing a loved one approach death. We listen without judgement or solutions. We model kindness and openness. We accept the messiness of family dynamics and do not turn away.

If requested, we will offer ways of connecting with loved ones that support the process of dying. It may as simple as adjusting a pillow, or as profound as saying something you’ve never allowed yourself to say before.

In what ways can we better support the dying and help to provide comfort?

We can help people feel less alone. Without attachment to the ways things were, we can help those we serve be present to their current circumstances. If we can be with people in the present moment, free from the complications of the past or without anticipation of what comes next, we can experience loving presence. In fact, when we are truly present, there is no room for anything else; just love.

For some, a hand to hold is comforting. For others, we simply listen. It can be extremely helpful to elicit stories from those who are moving toward death. If we can show up authentically with the intention to be with whatever suffering shows up, our presence may comfort. And we accept with no less of an open heart that when it doesn’t, it doesn’t.

What new opportunities is ZHP exploring to continue supporting the community?

Zen Hospice Project is working now to augment the offerings and availability of Mindful Caregiver Education for family, informal, and professional caregivers. Additionally, we are working hard to increase awareness of and accessibility to our curriculum through improvements such as upgrading our website, increasing scheduling flexibility for our courses, developing new curriculum, and offering online introductory courses on a donation basis. Additionally, I am personally focused on establishing custom partnerships with health-care providers to distribute mindful caregiver courses to their member family caregivers.

Guest House volunteers. Photo: Melia Robinson/Tech Insider, via Business Insider

We are currently pursuing opportunities for our volunteers to serve at new locations in San Francisco beyond Laguna Honda Hospital in order to bring our model of care to more palliative and hospice care residents and their families.

Finally, we continue to share what we learned from our experience of operating the Guest House facility. It always served as an incubator, inspiring others to open their own residential hospice houses. We trust that this legacy will continue.

We are eager to share our 31 years of experience and to collaborate with the End Well community and beyond. I invite this community to please reach out to me with ideas for collaboration, custom courses, and ways to partner to improve caregiving and end of life experiences for everyone.

Given the organization’s longevity, what would the team like to share about what they’ve learned about the end-of-life experience?

Well, collectively we have learned a lot. We have impacted many over the years through our programs. The end of life experience presents an opportunity for profound growth and connection for both the one who is dying and family, friends, and caregivers. It can be a healing time whereby we can experience the deepest sense of connection we’ve ever had. It is true that dying can be messy and painful, yet if we can train the heart and mind to open to the experience, it can be expansive.

From my own experience, I know this to be true for the ones witnessing the death of a loved one, and I trust it is true for the one who is dying. I’ve learned that taking death on as a lifelong teacher can enhance one’s sense of well-being, it deepens the experience of the prosocial emotions of compassion, gratitude and awe. We learn directly that life is short and precious; the joyful moments and the suffering moments.

How can the community help support ZHP? And caregiving and hospice in general?

The community can support Zen Hospice Project by spreading the word about our Mindful Caregiver Education. We have learned so much about the challenges and joys of caregiving and what’s possible at the end of life; we want to share what we’ve learned and our model of compassionate human-centered care with as many people as possible.

We all have caregiving in common; we’ve been cared for, we know caregivers or are caregivers, and most likely, we’ll need caregiving at some point in our lives. People can support caregiving and hospice in many ways: by encouraging self-care or offering respite to the caregivers in their own lives; by supporting organizations through donations or volunteer service that are working against the clock to prepare future caregivers for the roles they will eventually fill; and by finding opportunities to talk about death and dying and their own values about the end of life with family and friends.

We are energized to see so much engagement, innovation, conversation, and commitment to improving caregiving and end-of-life experiences; the need is great and growing and we plan to be here and to continue to collaborate with the End Well community and organizations, clinicians, individuals, and other partners to make a meaningful impact in designing a better experience for everyone.

What activities or training opportunities exist that our community can get involved with?

Zen Hospice Project’s Volunteer Caregiver Program is thriving, and our volunteer caregivers continue to serve on the Palliative Care Ward at Laguna Honda Hospital in San Francisco. Soon, we expect to have an additional service site for volunteer caregivers.

We train volunteers to serve with a range of skills grounded in a foundation of mindfulness, compassion, and practical support for residents, families, and even other caregivers. Our volunteers find their training and service to be a source for resiliency, inspiration, and open-heartedness. As a result, the Zen Hospice Project Volunteer Caregiver Program has emerged as one of the longest continuously running hospice volunteer programs in the country. Although volunteers are required to commit to one year of service, many serve well beyond. Our average volunteer term is five years with many volunteers serving for a decade or more.

Additionally, our Mindful Caregiver Education courses are available to everyone; family, informal, and professional caregivers; friends of people who are sick or dying; those developing a mindfulness practice to support their relationships with family, friends, the public and one’s self; and those who anticipate being a caregiver in the future. Many caregivers share that they feel more confident, resilient, and patient in their caregiving roles after completing an MCE course.

Our Open Death Conversations, offered both in person and online, are intended for people who are interested in exploring and furthering their own relationship to the big topics of death and dying. Everyone is invited; we only ask that participants show up with an open heart and open mind, and allow themselves to go where they need to go. People from all backgrounds attend our conversations — young, old, many people who have not had experience with death, some people who are facing their own end of life.

We have no agenda other than to generate meaningful, energetic conversation free from judgment.

Closing

I am so grateful for the opportunity to share what’s going on at Zen Hospice Project with the End Well community, and I invite people to contact me directly at roy@zenhospice.org with ideas for partnership and collaboration, questions, or “just” for a conversation. (I know some of the best spots in the East Bay and SF for tea and a scone.)

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